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need help!


kaychloe23

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In January, my father was going in for a knee replacement. A routine cat scan found a tumor (nodule) on his right lobe. Knee surgery was put on hold. Surgery for the tumor was successful with the surgeon being able to take out the whole lobe. In July, my father went for a follow-up Pet Scan. Hot spots have been discovered on the pet scan in three lymph nodes and lining of the lung. He has progressed from a Stage 1 to a Stage 111B within 6 months! 2 of 6 board of doctors at Sloan are questioning some of the hot spots. They feel it may be scar tissue from his surgery. We were told that scar tissue can sometimes come up as hot spots on the pet scan. They want to review his original cat scan (pre-surgery). We are awaiting their suggestion. Treatment is our concern. We were told that normally treatment would be chemotherapy and radiation. Unfortunately, radiation is not an option because his lungs are in such bad shape. They suggested chemotherapy - combination of Taxol and carboplatin. I am sorry this is so long. Do you know anything about false positive pet scans and alternative treatment to try along with the chemotherapy. Thank you for your time and help!!

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Hello Kay-

Your father is fortunate to have you! Your love for him shows thorugh your posted message.

Getting a second and third opinion may be something for you to think about. False postitives are scarier than positive false. You just never know.

My personal feeelings about alternative medicines is that when one is dealing with something as strong and as determined as cancer, then one should go with the treatment that has a proven track record - but use the alternative medicine with it. Alternative medicines do work, but I personally would want the strongest thing out there...in order to give me my best shot.

I had carbo/taxol. It is a strong chemotherepy. I lost my hair, everywhere (!), developed nueropathy in both legs and feet, had diarrhea, deep bone pain, and some little things....but, today I am cancer free. 1/2 of my hair grew back (everwhere!), my nueropathy went away accept for just a wee bit in both of my big toes, I don't have anyother things left over from the chemo.

I had my entire left lung removed, July 9, 2001...when I was 61...I am now 63.

Happy and postive thoughts are being sent by me to you and your father. Remember, no one is terminal until they are dead..and even then life goes on in another way...onward! Ellen Lilja

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Kay - There is really no such thing as a false positive PET. What PET detects is increased metabolic uptake in a specific region and translates this into a "lit up" area. The metabolic uptake can be anything ranging from infectious process, to scar tissue, to a tumor.

There is cause for concern when a "lit up" PET corresponds to an abnormaly detected through a CT scan. But in and of itself, it does not necessarily mean that the uptake on the PET and the abnormaly seen on CT is cancer. It can also be scar tissue as indicated by some of your father's doctors.

When physicians aren't positive, they will usually recommend repeat CT/PET and perform comparisons with the baseline CT/PET. Any growth seen - and measured though CT - and confirmed by PET - is ruled as suspect for neoplasm. The next course of action, assuming the area of concern is amenable to biopsy, is usually to perform a FNA biopsy (fine needle aspiration) to rule in/out cancer. If pathology reveals cancer (localized), and the patient can tolerate the procedure, the next course of action is surgical excision through either wedge resection, lobectomy or pneumectomy along with removal and sampling of sentinel nodes.

Until your father's doctors are certain that it is cancer, I would not jump to conclusions as to his staging or as to his follow on treatment.

If indeed it is cancer - then he would be stage IIIB - and chemo would be appropriate treatment regimen. If the chemo were to fail, he would most likely be given Iressa - an anti-angiogenetic drug - considered a 3rd line chemo agent. Iressa is administered in the form of a pill, taken once a day. Though it has side effects, they are typically nowhere near as harsh as other chemo agents.

if there were metastasis to the hip or to the spinal cord - they would irradiate it to relieve the pain. If there were evident metastasis, they would also probably want to give him WBR (whole brain radiation) as a prophylatic measure to stave off mets to the brain.

He may also be referred to a clinical trial which involves undergoing experimental procedures above and beyond standard treatment protocols - many of which have shown promising results.

The key is not to get overly alarmed by every twist and turn - and I know that this is difficult when we are talking about a loved one - it is important to learn to roll with the punches.

Hang in there - God bless.

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